Wednesday, December 14, 2016

Beginning The New Year, With A New Treatment Regimen

It's truly amazing what a few months can do for one's health and wellness, in a wonderful way of course. Since my previous post from July, I have now been established at a different Hemophilia Treatment Center (HTC), and have been under the care of an all new physician team. Having a fresh set of eyes on my treatment plans have been the breath of fresh air this patient has been longing and praying for quite some time.

Adynovate Hemophilia Factor VIII Therapy
For starters, I am now on a brand new drug to treat my hemophilia called Adynovate, a longer-lasting factor VIII infusion that requires only 2 infusions a week for prophylactic therapy. That's right, I've gone from 3 infusions a week, to only two! So far, after being on the drug for 2 weeks, it's still too early to document the side effects, improvements and overall benefits of a long lasting anti-hemophiliac drug, but the initial reactions are good, and I'm finding myself just a tad more active than usual. Not sure if it's the Holiday season, or the fact I'm just feeling better, but I will certainly keep all my faithful bleeding disorder community readers up to date on my progress. It is also worth mentioning that it was determined that my previous dosing was far under the limit needed for prophy-infusions. I was taking 2000IU 3x-weekly; whereas now I take 3200IU on Wednesday and Saturday. Physicians measure your overall weight ratio to determine the proper dosing for factor VIII. My dosing had not been re-evaluated in over 10 years. So having a new physician on my team who is proactive in the community and constantly being updated on the latest treatment methods is a huge leap forward going into 2017.

I also broke an all time personal record in a single week of walking, proving to myself that age, chronic illness and stereotypes aren't necessarily accurate when it comes to internal will power. This past autumn, my wife and I were in New York City for some special events before Thanksgiving, and when my totals were calculated on my Apple Watch for the week, the results blew me away. I had walked a total distance of 41.42 miles in just Manhattan alone. Let this be an encouragement to those with joint damage, bad knees and ankles like myself, that you can do it! There were many blocks of walking, many steps down into the Subway, but I did it! Sure I was sore at night, but the overall benefits of walking and being active truly outweigh not doing anything at all. The human body is truly a remarkable creation, and it's very resilient, so I encourage all of you to get the proper exercise. Just walking a couple times a week will benefit you immensely.

Tomorrow morning, I start a brand new HIV medication and I'm really excited and anxious to be on the drug. For over 12 years, I've been on the same HIV regimen. As a matter of fact, it was when I was still living in Kentucky in 2004 that my HIV regimen was "concocted, and I've been on these 5 pills every day since then. Well, effective tomorrow, all of that is about to change with the new anti-viral called Triumeq. It contains Abacavir / dolutegravir / lamivudine, two of the drugs I am already taking from the tablet Epzicom. So dropping Reyataz (a protease inhibitor) and Nevirapine, I will now be on just one single tablet a day. I have to admit, I'm a little nervous about dropping three medications cold turkey and starting a brand new one. I am sure my digestive tract is going to be wonky for the next few days, but the benefits of being on this new drug are hopefully improved numbers for lipids and overall increased CD4 counts; my last few have hovered around the 400 mark. Triumeq is a combination class drug including an all new integrase inhibitor dolutegravir. I am eager to blog my overall progress on the new medication, and just really happy to go from 5 pills a day, to now only 1. We've come so far in the advancement of HIV treatment regimens, it simply astonishes me the improvements we're making. Hoping one day, a true cure for HIV will be available like there was for my HCV back in 2014.

So, 2017 is shaping up to be a year of change, refresh and progress. My hemophilia is now well maintained, with no current break out bleeds, and the new Adynovate seems to be doing exactly what it's meant to. With my HIV regimen change, there are some concerns about possible new side effects, lab work, CD4 counts etc... But that is all going to be monitored pretty frequently over the upcoming weeks/months on the new Triumeq drug. Overall, I am pleased with my decision to move my treatment and care from one facility to another. I encourage each of you who read this, if you're not happy with your current HTC and have the option to change, it could prove beneficial, especially if you aren't getting the results you're wanting or hoping for. Already, in just two months, I've had more tests, progress and treatments prescribed to me than ever before, and that's a great thing. I'm thrilled to see what accomplishments and doors will be open in 2017. Stay tuned!

Tuesday, July 26, 2016

Chronic Pain Management in Hemophiliacs, An Unheard Story

For the past couple of years, I've been weighing my options in terms of seeking medical treatment at my current Hemophilia Treatment Center (HTC). Deep down, I've felt more like I've been a statistic, rather than a genuinely cared for patient who lives with hemophilia. The treatment center has gradually slipped into an unforeseeable decline of patient care. Let me explain.

A very serious issue among the 40 something patient populous is the management of chronic pain, stemming directly from permanent joint damage derived from hemophilia related joint and muscle bleeding. Multiple bleeds over time, in my case almost 4 decades, have left me immobile in many of primary joints including left shoulder, right knee, right elbow and both ankles. The pain from this type of damage is at times, very intense and severe. Many times, leaving patients spending long nights lying awake in their recliners hoping and praying for some sign of relief to the inflamed joint so they can simply sleep.

Today, I was pretty much ostracized for my condition by my chronic pain management doctor, who up until today has been warmly welcoming to my condition and case. What was to be a routine follow-up appointment, ended in me questioning whether or not I was a lowlife addict who was only there to receive pain medication. His exact words, and I quote, "There is no need for you to be on pain medication, you appear today to be doing well." After explaining to the doctor that I've been having trouble sleeping as a direct result of pain from my joints and right elbow, he was forcibly quick to chime in, "Yeah, but you don't need a medication to sleep, there is nothing wrong with you." Upon attempting a second time to reinforce my disease of living with hemophilia, he looked and said, "I'm weaning you off all medications, and will put PRN on your appointment slip," which means no follow up. I left the clinic feeling worthless, defeated and that I was only there like an addict seeking a fix.

Let me be clear, I've seen the horrific effects of pain medication addiction even in my own family, I know the risks of being an addict versus taking a medication on an "as needed" basis for relief. I am in no way addicted to pain medication, and solely do no rely on them for daily function. Hemophilia and chronic joint pain go hand-in-hand, and no one in the industry today seems to want to blow the lid off this issue. The chronic pain management doctor gave multiple attempts to try to alleviate my pain by prescribing Gabapentin, and Lyrica, both neuro blockers that treat muscle and nerve pain. But, my pain isn't directly muscle or nerve, rather direct bone to bone grinding and internal joint hemorrhaging. Both drugs failed miserably at treating my pain, yet I gave them both valiant efforts.

My question to the everyone in the hemophilia community, "Why isn't this issue addressed more in older patients?" Patients today, age 25 or under, don't have the joint deformities we older patients have because they've all been placed on prophylactic treatment regimens to prevent bleeding episodes. Thankfully, now, I am on a preventative treatment regimen as well, but chronic pain is the number one issue that I face each day. I despise going to the pharmacist, handing him the script and the look he/she gives me when they read the drug's name.

And my complaint isn't with just the pain doctor, but the entire HTC as a whole. From their poorly communicated social worker, who has now since been replaced, to the physical therapist that simply walks in, looks at my joints, and states, "that's a really messed up joint right there, what are you doing for it?" Wait... Shouldn't you the physical therapist be offering me insightful knowledge on treatment options and, GASP... possible physical therapy sessions? Rehabilitating a joint, building muscle around the joints will cause a lot less bleeding episodes, but no treatment options are given or offered, just a consult, and out the door and on to the next.

If you're living with hemophilia, and you're currently happy with your doctors and treatment plans, than I am more than thrilled that you've found your niche. But, if you're a patient questioning your own value and worth, and your doctors demeaning tone leaves you feeling more-or-less like a "frequent flyer," than it's definitely time to change. So, as of today, I'm doing just that! I've been with this HTC since March 2009, and in these past 7 years seen a gradual decline of patient care and value. If you're like me, and trapped in the psychological mind game of treatment facilities, than perhaps you should take a stand and change things up. Effective today, I will no longer seek medical treatment for hemophilia from this facility. I am moving my care to to a different city, a new HTC and a doctor whose perspective on hemophilia is more compassionate than the latterly explained.

Hemophilia and chronic pain management will forever be tied together. I stand silent no more, and plan to expose the dark side of the health care industry. Don't stay at an HTC just because you get what you need, that's not progress. Stay because you feel valued, respected and cared for. 

Monday, July 25, 2016

National Hemophilia Foundation's 68th Annual Meeting (NHF 2016)

The entrance the annual NHF conference at Gaylord Palms.
The NHF annual conference is designed to connect both patient and caregivers to the industry leaders among the pharmaceutical companies and the physicians who treat hemophilia. This year's annual conference was held at the 'Gaylord Palms Hotel & Resort' in Orlando, Florida, and kicked off a three day event on Thursday July 21st-23rd, 2016. For the first time, the NHF conference lead into the World Federation of Hemophilia (WFH 2016) conference, which is a global initiative to see seek "Treatment for All." WFH unites global hemophilia chapters, bringing together scientists, physicians, patients and caregivers from across the globe with a 4 day conference.

Joseph & Alexandra Burke with Jeanne White-Ginder, Ryan White's mother.
This year, was very emotional and there was a sense of spiritual connectivity among fellow hemophiliac survivors. A fresh sense of rebirth is awakening among the bleeding disorder community, as new treatments not only for bleeding disorders are on the horizon, but breakthroughs in HIV and Hepatitis C therapies have given the community a 'Burst of Life.' More and more hemophiliacs who were affected by the pharmaceutical tragedies of the 1980's are being cured of HCV, and thus the mortality rates among the bleeding disorder community among that generation of bleeders have significantly been reduced. I had the honor to hear Ryan White's beloved mother, Jeanne White-Ginder speak at the conference on the realities behind the scenes during Ryan's media bombardment of the late 80's and early 90's. She recalled fond memories of Grammy winning musician Elton John staying by Jeanne's side during Ryan's final hours, to a heartfelt phone call from the 'King of Pop,' Michael Jackson. What a strong and humble woman Jeanne is, a true beacon of hope and light among the bleeding disorder community. For me personally, this journey has in many ways come full circle, as I now realize my role and plan of action in my own steps toward hemophilia, HIV and HCV advocacy.

Joseph & Alexandra Burke with Clifford & Louise Ray.
I also had the distinct honor of meeting another ambassador of the hemophilia community, Louise Ray. Mother of Ricky, Bobby and Randy Ray, many can remember the horrific news media coverage of their home being burned in Arcadia, FL because of the AIDS scare in the 1980's. They've endured so much, and today only Randy Ray survives, carrying the torch for his two brothers. The bond between the Rays and Whites is strong, and their story echoes the senseless tragedies and dark ages of the pharmaceutical industry among the bleeding disorder communities. It was very emotional for me as a patient and now advocate to hear their stories of enduring, which ignites my own passion and fire to educate the world that, "We've Come So Far, But Not Far Enough."

Alexandra looks at artwork in the Blood Works Gallery
from her husband Joseph Burke.
A special blessing was having several of my paintings featured for the second year in a row at the gallery of "Blood Works."The gallery is composed from submissions only from the bleeding disorders community, and highlights the artistic creativity that thrives among those living with hemophilia or Von-Willebrands disease. I even had three songs on the "Blood Vibrations: 5 (Blood Work Mixtape)."I want to give a huge shout out to Justin Levesque from Maine, who organized and coordinated the Blood Work gallery exhibit during NHF's 68th Annual meeting. Justin is from FOLX, which "aims to support positive physical & mental health outcomes for people in the bleeding disorders community from diverse backgrounds."Again, great job Justin!

Joseph & Alexandra's Artwork Piece during "Couples Art Therapy."
One of the sessions on the final day of NHF was "Couples Art Therapy." The session allowed couples to dive inside the dark portions of living with hemophilia, yet focusing on the hope of a brighter future. The class was open for interpretation, and allowed couples to create works of art that depicted their dreams and ambitions together. My wife Alexandra and I had so much fun putting together this piece that overlapped our hands, while putting our faith in God at the center of our lives. We got several really heartfelt comments from participants and officiants of the session on our idea. It is our hope for me to be cured of HIV, and remain thriving for God and each other. A testament to enduring the hardships of life, and achieving favor in the eyes of your spouse. This session was very unique, and in-depth, and allowed couples to artistically reveal what their hearts and minds are truly saying about living with a bleeding disorder, or caring for someone with the disease.

For more pictures from NHF 2016, please see the official album below from my I Strive 2 Thrive Facebook Page.

Thursday, April 14, 2016

Relief - A Joint Health Supplement 30 Day Review from It Works!

Over the course of the next 30 days, I will be blogging and posting about my experiences trying the new relief supplement from the company It Works! For years, I've tried countless supplements and options to treat me joint pain, and so far, nothing has worked.

I am doing this in hopes of possibly bringing light of a new product to the bleeding disorders community, and hemophiliacs alike. There's no guarantee this will do anything, but I'm certainly willing to try. Please follow me on these social media platforms as I journal, blog and post picture updates about my experiences over the next 30 days. Here's one thing you can rest assured on, I will be brutally honest with my readers and viewers. If the supplement does not work for me, makes ailments better or worse, I will be 100% transparent.


Tuesday, March 1, 2016

March is Bleeding Disorders Awareness Month

For over 30 years, the Hemophilia community has recognized March unofficially as "Bleeding Disorders Awareness Month." The name originally came from a 1986 Proclamation by President Ronald Regan, the impact and message as always been about bleeding disorders in general, and embracing the history from which the hemophilia community originates.

We've come a long way since the 70's when hemophilia treatments first began being used mainstream. The community has endured and suffered it's fair share of heartache and loss. Treatments today are improved vastly, and breakthrough treatments are in development as we speak to help the hemophilia community with our bleeding disorders.

Over the next 31 days, let's pause to reflect, taking a glimpse back, while straining forward and embracing new horizons in bleeding disorders. Reconnect with family members, share old photos and post on social to support someone you love with a bleeding disorder.

The follow list of things to do comes from the Hemophilia Federation of America.

Sunday, January 24, 2016

Colonoscopy Procedure and Results

January 7th, 2016 - The official day of my scheduled colonoscopy, with final answers and results.

As some of you know who've kept up with me via my web site, Facebook, Twitter and Instagram accounts, I've had a colonoscopy and endoscopy scheduled since finding out the results of a relative who was diagnosed with colon cancer. Since the discovery of the relative's diagnosis, I have been on a personal mission to get the procedure done myself, and finally have a baseline of where I stand. Being a hemophiliac living with HIV, compounded with over thirty years of Hepatitis C (now cured), I was in the high risk category for digestive disease.

I would honestly have to say the most difficult part of this procedure is definitely the procedure prep the day before. Drinking the Golytely solution and not having any solid food, on top of taking diarrhetic pills will make you weak for sure. I powered through January 6th, and kept on my regimen of HIV medications despite only drinking beef broth and Jello. If I can do it, so can you! Let's just say that day was one not to remember.

Click image for larger version of pathology report.
The procedure itself was fast. I checked in to the hospital, and within minutes was in the back, undressing, getting hooked up to IV's and talking with nurses and my anesthesiologist. No more than thirty minutes later, I was wheeled in the back where I met Dr. Baskar, who performed both procedures. My confidence in him grew even more as he asked yet again, "Did you take your factor VIII?" There was an entire hematology checklist I had to follow before, during and after the procedures.

Luckily, I am happy to report I have no colon or bowel disease of any kind. Not even a polyp. The upper endoscopy showed mild gastritis aka GERD, but nothing alarming.  I am totally relieved by the results, and can now take a huge sigh of relief in knowing the final results.

In closing, this journey was no where near as difficult to accomplish as I had initially thought it would be. I was able to get the referrals to the specialists, visit the specialist, schedule the procedures and then have them done all within a two month window. If I can do this, than there's just no excuse or reason why you can't either. Get check out, get a colonoscopy and get the results you need to know about, especially if you have a family history of digestive disease.

Next up for me, getting my joints repaired, starting with the ankles first. Before 2020, I hope to be the bionic man.

Wednesday, January 20, 2016

Florida Looks to Expand Hemophilia Companies to Treat Expensive Disease

Yours truly was featured yesterday morning, January 19th, 2016 on NPR's Orlando station WMFE 90.7 FM. The topic, Florida is seeking to expand companies that provide treatment to it's hemophiliac patients. [read full article here].
by  (WMFE)

Drugs like these can cost more than $130,000 per year for patients with hemophilia.

Hemophiliac patients on Medicaid could have more options for treatment in Florida this year.The Florida Agency for Health Care Administration is asking the federal government to allow three companies to provide care for patients with the rare blood-clotting disorder.

Florida officials are asking residents for input at meetings Tuesday and Thursday. Hemophilia is a rare disease where a patient’s blood doesn’t clot normally.

And while hemophilia is rare, treating it is expensive: an average of more than $130,000 per year for each patient. There are just 183 patients on Medicaid with hemophilia, but treatments for those 183 patients cost $24 million a year.

Florida wants the federal government to allow three vendors. That way, the state says it will be able to get the highest quality, lowest cost vendor.

Joseph Burke is a 36-year-old hemophiliac living in Clermont. He said companies often try to get him on new treatments.

“It’s crazy just how they try to woo you in and get you on their product,” Burke said. “Once they have you in, it’s kinda like they got the golden ticket.”
Burke said his drugs cost roughly $30,000 per month. See below for the time and place on the meetings:

Tuesday, January 19, 2016 from 2 p.m. to 4 p.m.
Location: Agency for Health Care Administration
2727 Mahan Drive Building 3, Conference Room, Tallahassee, FL 32308
Conference Line: 1-888-670-3525; Participant Code: 371 527 4100#
Thursday, January 21, 2016 from 1:00 p.m. – 2:30 p.m. 
Location: Agency for Health Care Administration
6800 North Dale Mabry Highway, Suite 220, Main Training Room, Tampa, FL 33614

Tuesday, January 19, 2016

'Iron Max': Marvel Features Boy With Hemophilia in Iron Man Comic Book

Taken from this morning.

When 3-year-old Max Levy needed to get a metal disk surgically inserted into his chest to allow easier treatments for his blood disorder, his father struggled with how to tell him the news.

Then dad got an idea.
"We had just seen the movie 'Iron Man' few days before," said Dan Levy. "I said to him, 'Do you remember the scene where Tony Stark takes the port, takes the arch reactor out of his chest and puts the new one in? ... you're going to get one of those."

"'I get to be Iron Man'" Max responded, according to his father.

And that's when "Iron Max" was born."